Heart transplant girl Anna Hadley's father shares the family's experience

Andy Hadley, the father of Red Hill girl Anna Hadley, who is recuperating following a heart transplant, explains the experience the family has gone through.

Did Anna have a pre-existing condition or did her problems arise unexpectedly?

Anna suffered episodes of breathlessness during exercise when she was in primary school and was diagnosed with asthma at round 10 years old.

We now know she wasn't asthmatic but her symptoms were very typical of asthma. It is highly unlikely that her GP would have ever experienced a child with Restrictive Cardiomyopathy because it is so very rare.

How did Anna’s symptoms show themselves and what were the effects on her?

Anna suffered episodes of breathless which only bothered her because they got in the way of her sports.

Anna suffered a collapse at Nunnery Wood High School in November, 2017. At the time this was thought to have been an asthma attack and subsequent checks in A&E, including an ECG, did not indicate anything else was wrong.

Anna was discharged and continued to play her sports but over time she seemed to be more dependent on her asthma inhaler.

She trialled for the Worcestershire County U-13s hockey team in November, 2018. I remember it was a bitterly cold and windy day in Shrewsbury.

Anna really struggled, spending time off the pitch in the dugout with breathlessness. I recall that the inhaler did not seem to ease her symptoms and that was the first time I began to think that her medication may not be right or she was possibly using it incorrectly.

I never dreamed that it would be a heart problem. Despite time on the sidelines Anna still impressed and was duly selected to play for the county.

Two weeks later Anna suffered another attack during a PE lesson at school when she was running around the athletics track.

She also suffered a seizure and her PE teacher, who is an asthmatic, was able to describe the incident in some detail to a Paediatrician at Worcestershire Royal Hospital.

The PE teacher was confident that Anna had not suffered a typical asthma attack. Standard checks and another ECG all still appeared normal.

How did you, as parents feel during the early stages?

We thought we were parenting an asthmatic child, so we were just getting on with life as normal with inhalers always at hand.

It was Anna's second collapse which really sparked what I can only describe as a 'mother's instinct' My wife Amanda, refused to leave Worcestershire Royal Hospital until Anna had been seen by a consultant.

Looking back, this was such a crucial moment in Anna's eventual diagnosis. We now know that both collapses had put Anna life in danger. She could easily have died.

The consultant did say that there was nothing too unusual about Anna's ECG but he was also concerned that she had collapsed during exercise and with the added insight from her PE teacher, Anna was then referred to Birmingham Children's Hospital for further investigations.

Following an echocardiagram of her heart in January, 2018, Anna was diagnosed with Restrictive Cardiomyopathy (RCM), a very rare heart disease which causes heart failure. It is a terminal illness.

RCM causes the heart muscle to stiffen over time so it struggles to relax and expand, so cannot fill with blood as a normal heart would. Anna also suffered with Long QT syndrome, a heart rhythm issue which also manifests during strenuous exercise.

None of this was ever going to be detected with an ECG taken when she was calm and relaxed.

The diagnosis was truly devastating and I remember Anna asking me if she was going to die. I really wasn't expecting that and I didn't know what to say.

We were both very tearful as I explained to her that it was a very serious condition but we knew what it was and she was going to visit the best children's hospital in the world. I promised her I would do everything I could to fix things. It’s all I could offer.

Anna seemed to accept my answer. Her next question was "So...can I go back to playing hockey?" A far easier question to answer but as I told her she wasn't allowed to, she broke down in tears. That news was far more devastating to Anna than the heart failure diagnosis.

That was an early parenting lesson for me. I needed to consider everything from her viewpoint if I was going to be able to support her.

The diagnosis was such a cruel blow to such an active teenager and about as serious as it could have been in terms of her health.

Anna had a terminal condition which required a further referral to Great Ormond Street Hospital (GOSH) in London, one of only two hospitals in the UK which treats heart failure in children.

We already knew that Anna was likely to be listed for a heart transplant at some point in the future. We had to wait a month before we got an appointment at GOSH and that was a hard few weeks, just trying to come to terms with the situation.

We researched her conditions and transplant statistics and that terrified us. Around 40 per cent of kids waiting for heart transplant never get transplanted. They either become too ill to operate on or never find a donor.

How has Anna faced up to her situation?

Everything Anna loved doing was taken away from her overnight. She never got to play for the county hockey team. She also had to withdraw from a school skiing trip just two weeks before. She was not allowed to do anything which would cause her to get breathless and this included bouncing on the trampoline in the garden and riding her mountain bike.

She needed to live a sedate life and that was the opposite of everything which defined Anna.

Despite this Anna was still typically positive about life. She is known for her smile and she just wanted life to continue normally. Boredom was her biggest challenge.

We tried many other activities which were less strenuous - cinema, ten pin bowling, eating out, walking the dog, but nothing seemed to fill the void which sport had left behind. Anna missed the social interaction which sport provided.

She also got bored by the attention she was receiving and asked us not to keep talking about her condition. She desperately wanted to be treated normally when so much was changing around her.

School helped by adapting to Anna's needs. She struggled with stairs and slopes and so her lessons were moved to the ground floors, teachers moved rooms to accommodate her needs and routes around school were carefully mapped to avoid slopes.

Anna was given a few extra minutes to move between lessons safely and was subject to the buddy system whereby she was accompanied at all times. The school also installed a defibrillator on site.

I cannot speak highly enough of Nunnery Wood High School and the way they adapted to ensure Anna stayed in regular school.

It was some close friends who suggested Anna join Crowle Players and take part in their Christmas panto. That became her regular outlet and she loved every minute of rehearsals. She even took the lead role in the 2019 production.

We had finally found something to fill the void and we are grateful to those good friends who encouraged Anna to join, as we were running out of ideas.  

There were lots of days off school for assessment and clinical visits to GOSH. We made sure these were also treat days and included visits to the Shard, the Sea Life Centre, Oxford Street, Covent Garden and London Zoo. Anna also enjoyed the train journeys to London and using the Underground. 

Anna was managing her condition brilliantly and has never stopped smiling. She once told me that the first year on the transplant list, had been the best year of her life so far.

When was the decision made to go for a heart transplant and how long did Anna have to wait?

Anna was listed for transplant in May, 2018. Her total wait was just over 20 months.

During that time she underwent a pioneering procedure to relive the pressure in her heart. Surgeons made a hole in Anna's heart between the two atrium chambers. This was done using a catheter inserted in her groin. She was only the sixth child in the UK to undergo the procedure.

The device used to keep the hole from closing was made in Sweden and it took many weeks before the procedure could go ahead as a special license had to be applied for. This procedure was necessary to protect the condition of Anna's lungs and ensure she remained operable and did not become a heart-lung transplant. 

That procedure was a huge success. Anna felt so much better and was able to do much more without feeling breathless. She even rejoined in her PE lessons again albeit she still wasn't allowed to run - but dodge-ball, rounders and a bit of netball shooting practice was very welcome having been starved of sports for so long.

When did she have her operation, how long did it take and what was involved?

Anna operation was early in February, 2020. We were woken by a call from GOSH at 2.30am to tell us that a potential donor had been found and an ambulance car was already en route to collect us.

Anna was so chilled out and even packed her GCSE English Literature revision notes into her suitcase - a clear indication that she was going to survive this ordeal and had things to be getting on with afterwards. We travelled to London under blue light, arriving at GOSH at 5.30am. 

It was a busy few hours, with Anna being checked over and bloods taken to ensure she was fit and well for the operation. It was also busy at the donor site with specialist surgical teams being sent to perform the organ retrieval.

We waited over 12 hours before Anna finally got the green light that told us the donor heart was a perfect match and the surgeons were happy to go ahead. Anna went into anaesthetic at 6.30pm.

It was such an emotional time. We always knew this time would come but at that moment our heads said "yes" but our hearts were still screaming "no".  All we could think about is that she seemed so well on the outside.

Anna was still attending school. She was even indoor rock climbing at Redpoint just two days before the call. Underneath the surface we also knew that without the transplant Anna would not survive many more years.

We went back to our accommodation and waited for updates. We had not slept, nor could we. An hour later we had a call to say Anna was all prepared. All the lines and tubes and life support mechanism were fitted and everything was going well.

Another hour and 15 minutes later we received another call. It was the transplant co-ordinator, saying: "Anna’s new heart is in and it is working beautifully."

Less than six hours after watching her go under anaesthetic we would stood beside Anna's bed in ICU. She was still under very heavy sedation and surrounded by machinery and wires and tubes. Three nurses were tending to her and they were calm and told us how well she had done. They took time to explain everything to us. We spent about an hour watching every breath and every beat of her new heart. She was finally free of disease.

We went back to the accommodation again and managed a few hours’ sleep. At 7am we went back into ICU. Anna could now hear us and she squeezed my hand to let me know she was OK. I told her everything had gone well and she had a new heart which was working beautifully. Somehow she managed to smile for me.

By that evening she was more responsive, nodding and shaking her head when we asked questions. She even started writing words on my hand using her finger. She asked how her granny was and wanted to know all about the tubes and wires. Before we left she raised both hands in the air and drew us a big heart.

Another 24 hours later and the ventilator had been removed. Anna was already sitting up in bed and was eating an ice pop and talking to us.

Another 24 hours later she was sitting in a chair eating a normal  dinner and even started some physio.

Less than five days after surgery Anna was walking around the ICU ward, having photographs taken. Her recovery rate was truly remarkable.

How is Anna’s recovery going and what is the longer term prognosis?

Anna walked out of GOSH 14 days after being her transplant, holding her new hockey stick. She had climbed six flights of stairs the day before to demonstrate how well she was feeling.

Anna takes a cocktail of 30 tablets daily but this will reduce over time. She is expected to be on medication for the rest of her life but she will be able to return to do her beloved sports. 

Transplant is never a cure. It replaces a terminal condition with a managed one. Some heart transplant patient are already 35 year post op, which gives us all great hope.

How did the community rally round and help and what would you say about their support?

Anna has had great support from friends, family, the BHF and the wider community, who have given generously to her fundraising activities.

Can you give more details of Anna’s fundraising efforts, particularly anything she did locally?

Anna was very active in terms of fundraising and raising awareness of the lack of organ donation in children. She undertook two sponsored walks for the Worcester branch of the British Heart Foundation, where she met other people who had been transplanted. They offered great support to her.

Anna also rode 132 miles (equivalent to riding from Worcester to GOSH) over four days on an electric bike kindly donated by On-bike Electric Bikes in Worcester to raise funds for GOSH.

In all Anna raised over £8,000 for BHF and GOSH. She even appeared on BBC Midlands Today

What awards has Anna received?

Anna received a BHF HeartHero award from BHF in London. She was also commended by the Institute of Fundraising. At school she was the first Nunnery Wood High School pupil to ever receive the Adam Hussein award.  

What else would you like to say?

While Anna's incredible transplant journey highlights many positives, somewhere in the UK is a donor family who are still grieving the loss off a relative. In time Anna will get the opportunity to write to that family.

At the time of transplant it was impossible not to shed a tear for that unknown family, who have selflessly saved Anna's life. It is truly humbling to think that another family has, in their darkest hours, found strength to offer donation to complete strangers. They are superhuman. Without doubt, their kindness saved Anna's life. They positively impacted on my family, Anna's school friends and teachers and so many others who know her. 

Organ donation not only saves lives, it rescues entire families. It takes away suffering. It wipes away tears not just for the recipient but for everyone associated with them. There are no words which can ever describe our gratitude.

We hope one day Anna can meet the donor family and they can still feel the heartbeat of their loved ones, still beating strongly inside Anna, allowing her to live on and share some great experiences and always with a smile on her face.